Gaps in Care: Autism and the Pediatrician

A new study finds some surprising gaps in the health care received by children and teens with autism. Despite seeing many specialists, they are more likely to skip routine physical exams and vaccines than their peers without autism.1

Pediatricians consider well-child visits to be important for monitoring growth and development, assessing behavior, conducting vision, hearing or lead screenings, giving immunizations, and coordinating care.2 Together, these are called preventive services because their goal is to prevent serious illness.

"Children with autism spectrum disorder have complex health care needs, and it's really important that they get preventive care," said the study's lead author, Janet R. Cummings PhD, an associate professor at the Emory University School of Public Health.

Dr. Cummings was part of a research group that wanted to know more about the health services received by children with autism spectrum disorder (ASD), compared to children who don't have autism. Earlier studies found that youth with autism are more likely to visit doctors, as well as hospital emergency rooms, than others.3-5 But previous studies didn't always factor into the equation that children with autism are more likely to have certain physical and mental health conditions.6, 7

What's new about this study?

For this study, Dr. Cummings' team took into account those other diagnoses, which could contribute to some of those extra medical visits. They examined the records of more than 90,000 children ages 3 to 17, with and without autism. They all were enrolled in Kaiser Permanente health care systems in California, Oregon, Washington and Georgia, and Harvard Pilgrim Health Care in New England. The researchers then divided the children into two groups, those ages 3 to 9, and those ages 10 to 17, so they could better understand their patterns. "We recognize that what happens with health care utilization may differ as the child ages," Dr. Cummings explained.

Those with autism were more likely to have epilepsy, sleep disorders, genetic disorders, attention deficit-hyperactivity disorder (ADHD), anxiety or depression, among other conditions. About one fifth of the children with autism have a neurological disorder, a broad category that includes headaches, low muscle tone, movement disorders, cerebral palsy, or feeding problems, among other conditions.

In fact, children with autism did see certain specialists more often than their peers, even when researchers considered their higher rate of other health conditions. In particular, children under age 10 received more occupational, social skills and speech therapies, while those ages 10 to 17 had more psychological treatment, than their typically-developing classmates. Children with autism of all ages were more likely to have visited a neurologist, too.

They also saw their pediatricians a little more often – just not for preventive care. In particular, preteens and teens with autism were less likely to have a physical exam. And children with autism of all ages were less likely to receive vaccines, including flu shots. This was notable because some of the children had other health conditions that usually increase the likelihood of being vaccinated, such as asthma, allergies, and autoimmune disorders.1

What's Behind Vaccine Rates?

The researchers posed two possible explanations for the lower immunization rate. "Even though there is no credible research to support the association between childhood vaccinations as a potential cause of ASDs, the lingering controversy could contribute to lower rates of vaccinations among these youth."1 Other studies have found that some families may delay or refuse vaccines for their children because they have concerns about safety or autism.8 This was particularly true of parents of a child with autism.9, 10 A 2018 study found that children with ASD and their younger brothers and sisters were less likely to be fully vaccinated than other children.12 Nonetheless, several research studies have found no link between autism and vaccines, according to the U.S. Centers for Disease Control and Prevention.11

A second possible explanation may lie in the sensory problems common to autism. Children who find it especially uncomfortable to be touched by people or jabbed by needles might be less likely to get injections, the research team speculated.1

How health care providers address this issue may depend on what is really behind the lower immunization rates in these children, Dr. Cummings said. "Providers may consider talking to parents to find out whether they have concerns about vaccine safety or concerns about their child’s sensory sensitivity," she said.

Autism and the Emergency Room

Children with autism are spending less time in hospital emergency rooms (ERs)1 than previous studies have found.4, 5 Younger children with autism were equally likely to use the ER as younger children without autism, while older children with ASD were less likely to go to the ER.1 It's possible that pre-teens and teens with autism are less likely to participate in the sports, social and recreational activities that cause the injuries that send some of their classmates to the ER, researchers speculated.

A better understanding of the health-care use and needs of children with autism could improve care, the research team reported. "It is important for health care providers and families to work together to ensure that these youth receive the preventive care they need," Dr. Cummings said.

The U.S. HealthCare.gov website lists free preventive care benefits for children. (Note: "Most health plans must cover a set of preventive health services for children at no cost. This includes Marketplace and Medicaid coverage.")

The American Academy of Pediatrics answers vaccine questions for parents at HealthyChildren.org.

Photo of Dr. Cummings reprinted with permission of Emory University and Dr. Cummings. Other photo images from iStock.